Status of Women Committee on March 5th, 2014

[The Chair, NDP, Hélène LeBlanc]

Good afternoon everyone. Welcome to the 16th meeting of the Standing Committee on the Status of Women. I would also like to welcome Ms. Carly Lambert-Crawford and Ms. Lisa LaBorde, who will be providing testimony by videoconference.

Welcome. Thank you for being here. You will each have 10 minutes for your presentation followed by questions from the members.

I will start with Mrs. Lambert-Crawford, for 10 minutes, please.

[Carly Lambert-Crawford, As an Individual]

Thank you for having me here today.

I am a psychotherapist treating anxiety, depression, and eating disorders in Burlington, Ontario. I am also a proud member of the steering committee of the National Initiative for Eating Disorders.

I am here representing the voice of my clients along with my own voice as a survivor of anorexia. I'm proud to say that I'm one of the people that were able to get through our system despite its flaws.

As a therapist I often see people who the system didn't work for, the people who are waiting. I treat the most desperate of individuals and the sickest of the sick. They are lonely and desperate. I have only been a therapist for five years, and in my early career I have seen one of my clients die from anorexia. That is one client too many. She was bounced around, kicked out, and misunderstood. She struggled with OCD in addition to her eating disorder, and this left her paralyzed with fear. She was 20 years old when she died.

I have since known three more women who I was in treatment with who have all died from complications of their eating disorder. They were all under the age of 30 and were part of our system of care.

I can tell you right now that the statistics on eating disorders are downplaying this issue a thousand times over and millions are suffering in silence.

Prior to my work as a private practitioner, I worked as the program director at Danielle's Place, an eating disorder and support resource centre in Burlington, similar to Sheena's Place. Throughout my three years directing the centre, we had a terrible time getting funding to keep our doors open. Our aim was to provide services that were free of charge and would be free of waiting lists and were able to support the hundreds of men and women each year. Unfortunately, when I left the centre, they had to close their doors. This was devastating for a number of clients who saw the centre as their regular safe haven.

The inability to recognize the severity of the illness is one of the diagnostic criteria for anorexia nervosa, and this was me. I was one of the ones who had no idea that this was happening to me. Before I was diagnosed with anorexia, I was diagnosed with severe depression and anxiety. I suffered so badly that I really and truly did not know how to live without being on a myriad of different drugs to calm me down.

My eating disorder probably started when I was 16 years old. It was at this time that my family had gone through an extremely traumatic event, which is very typical for the onset of mental illness. Anorexia was one of the greatest gifts because it numbed my brain and it really helped slow these thoughts down.

Things went downhill pretty quickly, as they do, and all of a sudden things were getting harder for me to do. My doctor told me that I was underweight because I was a competitive athlete. He put me on a myriad of antidepressants that left me feeling a confused mess. I never weighed myself. This also surprises people. When I first weighed myself, it was the first thing that scared me enough to go to a specialist for assessment.

The next couple of years of my life are the hardest for me to talk about. These were the years that I was battling the system and myself. I had no idea what was happening to me. My world was falling apart. I was defeated. After years of loving the anorexia I let it take me.

From here I have a hard time remembering why, but I ended up on a psych ward in another city. I was the only anorexic patient within their whole entire program. My illness took over at this point and I was asked to leave that program. I was hospitalized in the ICU at my local hospital. I have had many doctors tell me they don't know how I survived.

I'm telling you this not to make you feel sorry for me, but for you to understand that my story is not unique. This happened all while I was waiting for an assessment with a local treatment centre. This happened while my parents were begging for someone to talk to me and for someone to understand. This all happened because I was kicked out of the psych ward because they did not know how to help me and my weight kept dropping. They asked me to leave their program at ... pounds at 20 years of age. [Pursuant to a motion passed on April 30, 2014, a portion of this testimony has been deleted. See Minutes of Proceedings] They discharged me from hospital at that weight because they told me I was being non-compliant.

From that moment on, I had no will to live or fight. My weight went down significantly and I ended up in the ICU surrounded by individuals who were three, four, or five times my age and dying of heart failure, cancer and other terminal illnesses.

My name happened to come up for an assessment at the Toronto General eating disorders program after waiting for four months for the assessment. They would not let me do the assessment over the phone and did not have the resources to send their specialist to me while I was in the hospital so I had to go by ambulance from Burlington to Toronto, hooked up to IVs, a tube that was feeding me and a heart monitor making sure I didn't go into cardiac arrest, just to prove that I was sick enough for their program. I actually remember lying there in bed completely out of it while a team of doctors asked me questions.

Does this seem right?

There is something wrong with our system. Would they make a child who was sick with cancer travel that long distance to prove they needed radiation or chemotherapy or to prove they needed to see an oncologist? From here I was put on a waiting list. I waited for four more months in a hospital where I endured the most disgusting abuse from the staff, which gave me the courage and the passion to do what I do today.

I don't want anyone to have to be told that there are a lot of other people there who are sicker than them and to just eat and stop taking up a bed, or to be told that they are too sick to talk to anyone and to not be given a voice to even try to understand.

I was eventually able to get a bed at the Toronto General eating disorders program. I spent four months there and left prematurely. I relapsed immediately, and from there I was facing outpatient treatments and very expensive individual therapy.

I worked tirelessly with my family and my husband to get where I am today. Many things that happened in my life were very influential in my recovery. Those seven years were the hardest of my life as I battled that system, but I truly believe my eating disorder has made me a better person. However, I will never ever underestimate the power this has on any individual that is diagnosed.

What I am here to get across today is that eating disorders are truly deadly illnesses. They take your life away and destroy families. As is the case with many other mental illnesses, people just do not understand. They feel an eating disorder is something you can just fix, something you need to address and get over. What we know now is that this is an illness of the brain, a psychological illness that takes away all logic and reasoning. I cannot believe how lucky I am to be sitting here right now, and how close my life came to ending. I have a very hard time making sense of it. I have a hard time making sense of it because there is no sense to make.

People die from this illness because there aren't adequate resources to treat it. Doctors misdiagnose and minimize the struggles, and people end up feeling enabled and blamed for something they do not understand. The prognosis for eating disorders is not very good. We know that it is hard to recover, and the longer the eating disorder goes on, the lower the chances for a full recovery.

We need help to make sure that when people are ready, there is treatment available. We need to put eating disorders on the radar and help people correct their misinterpretations of this illness and erase the stigma.

There are three aspects that I feel are most important to focus on at this time.

First is funding. As others who have spoken at this forum have said, I believe there needs to be equitable funding for eating disorders and other related illnesses. There need to be more beds and spots available so that waiting lists are shortened.

Second, I believe there needs to be an equitable amount of OHIP coverage for youth and adults who are struggling with eating disorders. OHIP is quite easily convinced to send anyone under the age of 18 to programs in the United States for specialized and timely care; however, anyone older is told to make use of our resources here.

Third, I believe there needs to be mandatory training for medical professionals to be able to properly screen and diagnose eating disorders. There needs to be more awareness and consistency among general practitioners, nurses, psychiatrists, and other professionals to ensure that this illness doesn't continue to be swept aside.

At this time, I am happy to answer any questions to help you understand my perspective and to offer any insight I may be able to bring to the study.

Thank you.

[The Chair, NDP, Hélène LeBlanc]

Thank you, Ms. Lambert-Crawford.

I will now give the floor to Ms. LaBorde for 10 minutes.

[Lisa LaBorde, As an Individual]

I would like to thank the committee for giving me this opportunity to present to you. I'm grateful to be able to give you a sense of what it is like for a family to navigate the system and care for a child with an eating disorder.

The field of eating disorder research and treatment has changed significantly in the last 10 years. The view of parents and their role has changed dramatically. There is now a current, effective, evidence-based treatment for adolescents, and it relies heavily on family involvement. We now know that families don't cause eating disorders and that families are in fact vital to their children's recovery.

My family's story is in many ways a version of a best-case scenario in the current treatment landscape. I say this for the following reasons.

I recognized that something was wrong with my daughter very early on. I was prepared to take immediate action. I managed to find up-to-date, evidence-based information quickly. I was ultimately connected to stellar hospital treatment, and I worked to link myself to support. My family's case is one example of “as good as it gets”, and still the experience was devastating. It took nine months from my first recognizing that something was wrong with my daughter to her being admitted to the hospital and beginning treatment. It took another year from the beginning of treatment until she was firmly in recovery.

It's an arduous and long journey. Caring for a child with a life-threatening illness is difficult; there's no getting around that. However, misinformation, stigma, and lack of accessible resources added to our burden. My daughter was diagnosed with anorexia when she was 10 years old. With this illness, early intervention is key. Early treatment correlates with better outcomes. Often, what parents see first are actually late-stage symptoms. I first noticed something was amiss in September 2010. What I first noticed were not eating disorder related changes but rather a change in her temperament. I had a 17-year-old and a 10-year-old, and both were happy and healthy. An eating disorder was not on my radar.

Our home environment was probably as close to an experiment in eating disorder prevention as one could get. There was no scale in our home. We did not have cable. I'd never been on a diet in my life, and I grew up in a culture that did not internalize the thin ideal. I worked to pass that on to my children also. We consciously spoke about healthy bodies of any size, and I raised them to be conscious and critical of media messages. Still, she got an eating disorder.

My daughter was a funny, independent kid. She was socially comfortable and had many friends. She loved school. She took piano and choir, not dance or gymnastics. She was affectionate and goofy and she was 10. Who gets an eating disorder at 10?, I thought. The fact that she did not fit the stereotypical image of an ED sufferer worked against us. It allowed me to question my instincts and to unthink what I saw. It allowed me to miss what I now know were clear signs.

Between January and the end of April 2011, I took her to the doctor three times. I expressed that something was wrong, that she was not eating, that she was complaining of a tummy ache, and that she seemed to be losing weight and was not herself. No alarms were sounded. By May, however, I knew that we had a serious problem. On May 15, I met her at school and I took her for lunch, for pizza, and I told her she had to finish. She took two bites and something washed over her and she said, “Mommy, I can't eat.” I went from the lunch to the school and I told them we would not be returning, and then I went straight to the doctor. The doctor spoke to her and finally said, “Yes, there's a problem.” He made a referral to the pediatric ED program at our local children's hospital. The doctor also told me, “Don't try to make her eat. You're not going to be able to. Don't be the food police.”

I was told nothing else at that time. I was given no information on eating disorders and no direction. I went home and I tried to get her to eat, and when I couldn't, I went on the Internet and I started searching. I remembered I had read a New York Times piece a few years earlier about a new treatment for anorexia called Maudsley. I searched for that piece and I was linked to information on family-based treatment, and I started to educate myself.

What I needed was better information and I needed more informed first-line treatment. I needed my family doctor to have the skills to identify earlier and to provide me with accurate information so that I could take action. Everything I found that was helpful to me I found on my own, and that should not have been the case. I should have been told, “Your daughter has a biological brain disorder. It's treatable. There are evidence-based practices for this age group.” I should have been told to feed my child, and I should have been supported in doing so.

To treat this illness, parents have to build a new skill set quickly. Understanding how the illness works and effective treatment methods early helps with this. What happens when you don't get that information is that you lose time, your confidence is undermined, and all the while your child is getting sicker. I often think about how things might have been different if I hadn't lost those early months.

During the time that we were on the wait list for the assessment, I tried to find community help. I phoned everywhere I could, and I felt like I was screaming in the wind. There was no help in the community for a 10-year-old. I knew that nutritional rehabilitation should be my focus, but I needed help. I felt like I was watching my child die slowly.

I took her to the emergency room at Sick Kids every single day, and two weeks later she was medically unstable and she was admitted. She spent seven weeks in-patient at the Hospital for Sick Children. On the ward at that time there was another 10-year-old and two 8-year-olds. We moved from in-patient to outpatient, and outpatient consisted of a clinic appointment and a family-based treatment appointment once a week. The other six and a half days of the week her care was in my hands.

This phase of treatment is called outpatient, but the work of treatment is not happening during the clinic visits. The work of treatment is happening at home. She gained 20 pounds in the hospital and she gained another 30 pounds at home.

With family-based treatment, the majority of work is happening at home and it is done by families. Treatment consists of feeding and interrupting symptoms. Food is medicine. It sounds easy, but getting an anorexic child to eat is anything but. My daughter will now say that it felt like I was pushing her out of an airplane without a parachute six times a day. What we were doing was exposure therapy, and cajoling, and bribing, and forcing. Nothing made it easier. The only thing that worked was making not eating not an option. If she ran and hid under the bed, I had to pull her out. If she threw the food, I had to plate it again. If she just sat there, I had to sit with her for as long as it took.

Quite simply, parents have to be stronger than the eating disorder. They have to be non-negotiable brick walls of love and compassion and strength. It's a different type of parenting and nothing you've done before prepares you for it. It is counter-instinctual, rather than soothe them you have to stay steady with them through tremendous distress. Eventually you get compliance and the weight goes on, and as they get closer to health, you begin to see your child return. It takes constant vigilance. She slept in my bed for eight months. I watched every meal go in for months. The learning curve is steep. It's hard on a family. Everybody feels it: siblings, partners, grandparents. It's a very isolating experience for families. There's stigma and shame, and most people simply don't understand. Your world becomes very small.

I focused on her recovery. I made that my number one priority. I took time from work and I took out a line of credit. My daughter was back at school in the fall with support. I met her every day for lunch for the entire school year. By the end of the school year, she was in true recovery. This past September, we saw a flare-up of symptoms due to anxiety that she was experiencing over a move to a new school. I knew what to look for this time and I addressed it right away. I got her plugged back into treatment and she's doing wonderfully now.

Parents are able to do this, but they need rings of support around them. They cannot do it alone and they should not have to.

Thank you.

I'll take any questions.

[The Chair, NDP, Hélène LeBlanc]

Thank you very much.

We'll start the questions with Madam Truppe, for seven minutes.

[Susan Truppe, Conservative, London North Centre, ON]

I'd like to welcome you to our committee. Thank you for coming and sharing your personal experiences.

We've heard so many stories from individuals who have had eating disorders, as well as all the people who are treating them. It's amazing how many people have to do everything on their own, as if there was nothing out there. I've heard the Maudsley family-based treatment mentioned several times. Interestingly enough, everyone is finding it on their own on the Internet, because certainly, for all the work that they've done and how much help it has given everyone, it doesn't seem there's a big awareness of it. Everybody simply seems to use Google and Maudsley comes up. It seems to be doing wonders for many people.

Ms. Crawford, maybe I will start with you.

I think you said you were 16 when it was determined you had an eating disorder. How long did you say that you felt you had the eating disorder before they put you on the psychiatric ward?

[Carly Lambert-Crawford]

The question is, how long after I was diagnosed was I in the hospital?

[Susan Truppe, Conservative, London North Centre, ON]

You were 16 at the time and then you felt that there was a problem. If you were only 16, were your parents—

[Carly Lambert-Crawford]

No. I'll clarify that, absolutely.

Looking back now, I can see that my eating disorder started when I was probably about 15. Nobody started talking about it until my very late teens, early twenties.

[Susan Truppe, Conservative, London North Centre, ON]

How did someone recognize that you had the eating disorder? Was it through an awareness program and someone realized that you had a problem, or did you or your family realize that?

[Carly Lambert-Crawford]

I think my family realized it first and pushed me into getting an assessment. Then from there it took years for me to be....

[Susan Truppe, Conservative, London North Centre, ON]

Once your family thought you should get an assessment then, did you go to the psychiatric ward?

[Carly Lambert-Crawford]

Yes.

[Susan Truppe, Conservative, London North Centre, ON]

And you weighed only ... pounds when they let you go? [Pursuant to a motion passed on April 30, 2014, a portion of this testimony has been deleted. See Minutes of Proceedings]

[Carly Lambert-Crawford]

Yes.

[Susan Truppe, Conservative, London North Centre, ON]

That's amazing.

[Carly Lambert-Crawford]

I was 20 years old, so....

[Susan Truppe, Conservative, London North Centre, ON]

Were there any awareness programs at the time that would have helped you to identify you had this type of problem?

[Carly Lambert-Crawford]

Yes, I think in relation to Lisa, I was an adult, so my family was very aware; however, they were helpless because I wasn't ready to make that connection. You've heard from Sheena's Place. There was Danielle's Place at the time, but I was seeing my family doctor weekly until the point of my hospitalization. He thought it was because I was an athlete and things like that, so there was no support there.

[Susan Truppe, Conservative, London North Centre, ON]

Then you opened Find Your Voice Counselling? Was that your initiative?

[Carly Lambert-Crawford]

Yes, I'm a private practitioner now.

[Susan Truppe, Conservative, London North Centre, ON]

How do you make young people or families aware of Find Your Voice Counselling? How do they know to come to you so you can share your experiences?

[Carly Lambert-Crawford]

A lot of my awareness is through the National Initiative for Eating Disorders, NIED. That's really where I want most of the focus to be.To find a private practitioner, we have NEDIC, an information centre based out of Toronto. That has all the eating disorder specialists and is like a database, so I know that's how a number of people come to find care. It's just that the care listed there is so limited at this point.

[Susan Truppe, Conservative, London North Centre, ON]

Do you have a best practice that you would like to share, something that really works to help either the individuals who have the eating disorder or to help the families?

[Carly Lambert-Crawford]

I use the evidence based, so I am trained in the Maudsley approach. I did my training with Daniel Le Grange in the United States. With adults we're really working with cognitive behavioural therapies; dialectical behavioural therapy is used a lot more now. It's very interesting that the treatment for adolescents and the treatment for adults is very different, so it's navigating those two systems.